Dr Mwidimi Ndosi Mwidimi.Ndosi@uwe.ac.uk
Associate Professor in Rheumatology Nursing
Fiona A Pearce
Jo Robson Jo.Robson@uwe.ac.uk
Consultant Associate Professor in Rheumatology
Abstract
Objectives To explore patients’ perspectives on the impact of appearance changes attributed to glucocorticoid treatment. Methods We conducted a secondary inductive thematic analysis of the ‘Steroid PRO’ semi-structured interviews with patients with rheumatic conditions receiving glucocorticoids in the UK, USA, and Australia. Results Sixty patient interviews were analysed. Age 26–84 years; 39 (65%) females, patients with: systemic vasculitis (n = 19), inflammatory arthritis (n = 14), crystal arthropathy (n = 2), connective tissue disorders (n = 16), other/multiple (n = 9). In addition to participants expressing the need for more information and support, three over-arching themes were identified: i) Societal norms: “I think my main concern, particularly being female, was the weight gain that the steroids had” (female aged 26–30). These included real or perceived expectations to which participants felt pressure to conform, which were sustained through interactions with others. ii) Harms to mental health and sense of self: “It makes you feel down. It makes you feel depressed. You don't want to socialise because you're not you” (male aged 61–65). Glucocorticoids were described as making participants ‘not look like’ themselves, associated with changes in mood and self-confidence. iii) Burden of adjustments: “I have a wardrobe right now that goes four different sizes” (female aged 51–55). Other adjustments related to diet, exercise, work, hobbies, activities of daily living, and key life events. Conclusion Patients attribute a variety of impacts on their quality of life to glucocorticoid-related appearance changes. We suggest ways to meet patients’ needs for information and support, which can be developed through further work.
